European Reference Networks for Rare Diseases

Do you want to become a member of the European Reference Networks for Rare Diseases?

23 - 24 September 2019 | Free of charge

It is expected that the European Commission will shortly announce a new call for members of European Reference Networks. To support healthcare providers in Ireland to join these networks, the National Clinical Programme for Rare Diseases will host two days of training on 23 and 24 September 2019.

This training will take place in RCPI.

What to expect

The schedule for this two-day training course is still being finalised. The draft schedule is as follows.

Day 1 - Monday 23 September 2019 | 10:00-18:00

Topics will include:

  • Overview of the Assessment Framework
  • Step-by-Step Guide to planning application (seven-stage process)
  • How to coordinate a successful application
  • Completing a Self-Assessment – General Criteria and Specific Criteria
  • Technical Assessment

Day 2 (optional) - Tuesday 24 September | 09:00-13:00

Trouble-Shooting an application - Day two will offer clinical teams an opportunity to meet on a one-to-one basis with the training facilitator Matt Bolz-Johnson.

One-hour appointments are available with Matt. To book an appointment please contact Grace O’Sullivan, Programme Manager, National Clinical Programme for Rare Diseases at

Meet your training facilitator Matt Bolz-Johnson

Matt Bolz-Johnson has worked for EURORDIS since 2014 and has led on advocating for the rare disease community by shaping the development and delivery of European Reference Networks (ERNs).

Matt has experience working on two Joint Actions for Rare Diseases and has been actively involved in the development of the concept of ERNs, their development, particularly patient involvement into the Networks, through the establishment of European Patient Advocacy Groups, which are formally linked to each ERN. He was a project lead for Partnership for Assessment of Clinical Excellence in European Reference Networks (PACE-ERN) consortium that coordinated the technical proposal for the Assessment Manual & Technical Toolbox for ERN applications, which was the blueprint for all 24 ERNs.

Matt is also an independent consultant who has provided direct support to European Reference Networks in the development of their original Network application and supported the establishment of the Networks, leading on clinical pathway and guideline development.

Matt previously worked for 14 years in the National Health Service in England, in both hospital and commissioning trusts, where he was responsible for strategy development, clinical turnaround, quality assessment and contracting across the full spectrum of healthcare. He was a National Commissioner for highly specialised healthcare services specifically leading on rare cancers, genetic conditions, rare paediatric conditions, transplantations and highly specialised mental health conditions.

Got questions?

If you would like to speak to someone about this course please contact Grace O’Sullivan, Programme Manager, National Clinical Programme for Rare Diseases & Acute Operations Endoscopy Programme.

Mobile: +353 (0)86 1409177

Direct Line: +353 (0)1 863 9692


Mon 23 Sep 2019 09:00 - 17:00
RCPI, Ireland€0.00